A Resolution to Be Heard

Have you set your resolutions for the New Year? Each year, many of us draft that all-important list, crossing our fingers that we’ll tackle those bad habits or conquer those important goals as we make it a part of our annual mission for the new year. Well, we’d like to suggest one to add to your list. It’s certainly on ours here at EB Resource and Hollister Wound Care.

Make yourself heard about EB in 2014…now more than ever.

Whether you’ve been a steady voice in the community for many years, raising awareness or research dollars or if you’ve never shared a thing with others about this little-known disease, the New Year marks a new opportunity to do so. We urge anyone reading this to consider adding EB advocacy to your list of goals. And if you’ve been doing that, a very big thank you and we hope that you’ll continue to be an active part of this community. Ways to do this include speaking up where you can about EB, taking part in awareness or fundraising activities and showing your support for those who are participating in EB events.

For many of us, EB advocacy has become a way of life, and that’s typically the case for anyone diagnosed with EB, parents of a child who is diagnosed or invaluable friends and loved ones within that inner circle supporting an EB family. But no matter how much any of us do, it always feels like we can do more, doesn’t it? It always feels like there’s one more family we can reach out to, one more call we can make, and one more tweet we can send.

As many prepare to settle in for holidays that bring family and friends together, sometimes from great distances, we want to encourage you to take this time to be thankful for those friends and family and look ahead to 2014 as a year for possibilities, as a year for being proactive, for achieving whatever it is you want to accomplish. We simply urge you to add to that list a broader, more passionate role for raising awareness about EB which includes educating others and encouraging them to make a difference in their own way.

EB Resource Resolutions

What To Expect From Us in 2013.

 


 

Happy New Year, everybody!

 

Each year, we set out to make EB Resource a more valuable resource for our community’s members, and 2013 is no exception.

 

We have already made it our mission to feature more voices on the blog and even include several guest blogs throughout the year from some of the people who are featured here in interviews. So look for that in the months ahead.

 

We will be asking more thought-provoking questions of members in EB Resource's Facebook and Twitter communities to generate greater dialogue among members, and we invite all of them to do the same. This is your forum as much as it is ours to provide the latest news and information but also to support one another. Often, that means seeking feedback from other families going through similar situations. We want you to feel completely at home to ask other members their recommendations for anything, whether it is EB-friendly footwear brands, fundraiser tips or strategies for school-related issues.

 

We also plan to promote more regularly upcoming EB events and fundraisers as well as any industry or medical community events related to its study or research. However, this is one area where we need your help! Many times, we get the news about an event’s existence too late after a blog has posted, and we cannot spread the word as much as we would have liked. If you know of any upcoming events, are planning your own or will be attending one, send us the details by email as soon as you have them (leslie.rader@hollisterwoundcare.com) or tell us about it at Facebook or Twitter so we may include it within our next quarterly blog about future events. The way to success for any of these awareness or fundraising campaigns is through word of mouth, and we want to do our part to lend a loud voice in that effort!

 

So these are some of the things that we have planned for our blog, Facebook and Twitter pages in 2013, but we are always looking for suggestions on ways you think we could to add greater value to this community. What else would you like to see EB Resource tackle – blog topics you’d like to read about, voices you wish to hear from or other ways you would like to interact with us and with others in the EB community? We welcome your suggestions. Email us or leave us a comment here with your input.

 

And may you and your family have a beautiful new year!